What is Euro-DyMA ?
Euro-DyMA, (European Dystrophia Myotonica Association) is a non-profit European patient association, entirely dedicated to Myotonic Dystrophy type 1 (Steinert disease), and type 2 (PROMM disease).
Myotonic Dystrophy type 1 (DM1) is a progressive neuromuscular disease affecting all the functions and organs of the body in a very variable way. It is the most common adult form of muscular dystrophy neuromuscular disease. Although no systemic cure exists at this time, symptoms can benefit from significant improvements with treatments. Cardiac and respiratory issues need particular attention, and anesthesia recommendations are now well established. Research is very active, main mechanisms are identified, and systemic drugs are in development.
Myotonic Dystrophy type 2 (DM2) is a proximal disease far less frequent in the population, with a spectrum of symptoms and mechanisms close to those of DM1, usually with a lower intensity, with the exception of pain. The genetic characteristics of DM2 are well known but natural history and treatments are less so, still in their infancy.
The main goal of Euro-DyMA is to federate the activities of nationwide patient associations involved in these 2 diseases, in order to speed up research and the availability of drugs.
The federation was born in September 2019, and it already brings together English, German, Swiss, Belgian, Italian, Greek, Danish, Dutch and French associations. Its head office is located at the Institute of Myology in Paris.
Euro-DyMA covers, through national associations, between 50,000 and 100,000 patients in Europe, and concentrates its action in 2 different but complementary ways:
- To bring the point of view of affected patients and families to European institutions, primarily health professionals, and drug developers.
- To identify, at the European level, the areas where care or research efforts must be intensified, and to harmonize knowledge about the disease in Europe.
Euro-DyMA has established a Scientific Advisory Board bringing together a team of the European researchers and clinicians most involved in the fight against Myotonic Dystrophy.